Parental Experiences of Engaging With the National Disability Insurance Scheme for Their Children: A Systematic Literature Review

Abstract

The Australian National Disability Insurance Scheme (NDIS) reached full national implementation in July 2019. It supports Australians with disabilities via individualized funding packages for disability-specific services and assistive technology. This systematic review of literature presents research describing the experiences of parents of children with disabilities in accessing and participating in the fledgling NDIS and makes recommendations to assist the Agency in better supporting new participant families.

Keywords

NDIS parental experience service provision disability individualized funding scheme

Get full access to this article

View all access options for this article.

References

Amanatullah

E. T.

Tinsley

C. H.

(2013). Punishing female negotiators for asserting too much . . . or not enough: Exploring why advocacy moderates backlash against assertive female negotiators. Organizational Behavior and Human Decision Processes, 120(1), 110–122.

Australian Bureau of Statistics. (2013). Australian Survey of Disability, Ageing and Carers 2010. https://www.abs.gov.au/AUSSTATS/abs@.nsf/allprimarymainfeatures/E36A0C8CC46057B9CA257C21000D8846?opendocument

Australian Bureau of Statistics. (2016). Australian Survey of Disability, Ageing and Carers 2015. http://www.abs.gov.au/ausstats/abs@.nsf/mf/4430.0

Australian Department of Social Services. (2017). Review of the National Disability Advocacy Program—Consultation report. https://engage.dss.gov.au/national-disability-advocacy-program/review-of-the-national-advocacy-program-consultation-report/

Australian Federal Government. (2016a). National Disability Insurance Act 2013. https://www.legislation.gov.au/Details/C2013A00020

Australian Federal Government. (2016b). Review of the National Disability Advocacy Plan. https://engage.dss.gov.au/wp-content/uploads/2016/04/Discussion-Paper-for-NDAP-Review-2.pdf

Bonyhady

(2014). Tides of change: The NDIS and its journey to transform disability support. New Paradigm: The Australian Journal on Psychosocial Rehabilitation, 2014, 7–9. http://dro.deakin.edu.au/eserv/DU:30061988/wilson-consumerchoices-2014.pdf#page=8

Brown

(1999). Parent voices on advocacy, education, disability and justice. In Ballard

(Ed.), Inclusive education: International voices on disability and justice (pp. 28–42). Psychology Press.

Brown

Anand

Fung

W. A.

Isaacs

Baum

(2003). Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Disabilities, 15(3), 207–230. https://doi.org/10.1023/A:1024931022773

10.

Crowe

T. K.

Florez

S. I.

(2006). Time use of mothers with school-age children: A continuing impact of a child’s disability. American Journal of Occupational Therapy, 60(2), 194–203. https://doi.org/10.5014/ajot.60.2.194

11.

Deloitte Access Economics. (2015). The economic value of informal care in Australia in 2015. http://www.carersaustralia.com.au/storage/Access%20Economics%20Report.pdf

12.

Dempsey

Keen

(2008). A review of processes and outcomes in family-centered services for children with a disability. Topics in Early Childhood Special Education, 28(1), 42–52. https://doi.org/10.1177/0271121408316699

13.

Dew

Bulkeley

Veitch

Bundy

Lincoln

Brentnall

Gallego

Griffiths

(2013). Carer and service providers’ experiences of individual funding models for children with a disability in rural and remote areas. Health and Social Care in the Community, 21(4), 432–441. https://doi.org/10.1111/hsc.12032

14.

Falcon

Crosse

Donaghy

Harrison

Hillman

Lawrence

Smith

White

(2006). CASP and CONSORT. British Dental Journal, 201(3), 130–131. https://doi.org/10.1038/sj.bdj.4813888

15.

Glidden

L. M.

Billings

F. J.

Jobe

B. M.

(2006). Personality, coping style and well-being of parents rearing children with developmental disabilities. Journal of Intellectual Disability Research, 50(12), 949–962. https://doi.org/10.1111/j.1365-2788.2006.00929.x

16.

Green

S. E.

(2007). “We’re tired, not sad”: Benefits and burdens of mothering a child with a disability. Social Science & Medicine, 64(1), 150–163. https://doi.org/10.1016/j.socscimed.2006.08.025

17.

Howard

Blakemore

Johnston

Taylor

Dibley

(2015). “I’m not really sure but I hope it’s better”: Early thoughts of parents and carers in a regional trial site for the Australian National Disability Insurance Scheme. Disability & Society, 30(9), 1365–1381. https://doi.org/10.1080/09687599.2015.1093462

18.

Johnston

Tracey

D. K.

Mahmic

Papps

F. A.

(2013). Getting the best from DisabilityCare Australia: Families, information and decision making: Report of a project undertaken for the practical design fund department of families, housing, community services and indigenous affairs. https://researchdirect.westernsydney.edu.au/islandora/object/uws:26945

19.

National Disability Insurance Agency. (2017). Participant pathway experience. https://www.ndis.gov.au/about-us/ndis-pathway-reform

20.

Navaie-Waliser

Feldman

P. H.

Gould

D. A.

Levine

Kuerbis

A. N.

Donelan

(2002). When the caregiver needs care: The plight of vulnerable caregivers. American Journal of Public Health, 92(3), 409–413. https://doi.org/10.2105/ajph.92.3.409

21.

Neufeld

Harrison

M. J.

Stewart

Hughes

(2008). Advocacy of women family caregivers: Response to nonsupportive interactions with professionals. Qualitative Health Research, 18(3), 301–310. https://doi.org/10.1177/1049732307313768

22.

Olsson

M. B.

Hwang

P. C.

(2003). Influence of macrostructure of society on the life situation of families with a child with intellectual disability: Sweden as an example. Journal of Intellectual Disability Research, 47(4–5), 328–341. https://doi.org/10.1046/j.1365-2788.2003.00494.x

23.

O’Tarpey

(2016). Early interventions and the NDIS. Rattler (Sydney), 117, 19–21.

24.

PRISMA. (2015). Transparent reporting of systematic reviews and meta-analyses. http://www.prisma-statement.org/

25.

Ranasinghe

Jeyaseelan

White

Russo

(2017). Parents’ experiences in registering with and accessing funding under the National Disability Insurance Scheme for early intervention services for children with developmental disabilities. Journal of Paediatrics and Child Health, 53(1), 26–32. https://doi.org/10.1111/jpc.13312

26.

Reddihough

D. S.

Meehan

Stott

N. S.

Delacy

M. J.

(2016). The National Disability Insurance Scheme: A time for real change in Australia. Developmental Medicine & Child Neurology, 58(Suppl. 2), 66–70. https://www.ncbi.nlm.nih.gov/pubmed/26782069

27.

Resch

J. A.

Mireles

Benz

M. R.

Grenwelge

Peterson

Zhang

(2010). Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology, 55(2), 139–150. https://doi.org/10.1037/a0019473

28.

Ryan

Runswick Cole

(2009). From advocate to activist? Mapping the experiences of mothers of children on the autism spectrum. Journal of Applied Research in Intellectual Disabilities, 22(1), 43–53. https://doi.org/10.1111/j.1468-3148.2008.00438.x

29.

Sheppard

Lefmann

Crowe

(2013). Perspectives on children’s physiotherapy services and DisabilityCare Australia. Perspectives (pp. 28–65). https://studylib.net/doc/6670512/perspectives-on-children-s-physiotherapy-services

30.

Simpson

Stewart

Douglas

(2016). The plan(ner) is always changing: Self-directed funding for children with hearing loss. Deafness & Education International, 18, 3151–3158. https://doi.org/10.1080/14643154.2016.1214025

31.

Tracey

Johnston

Papps

F. A.

Mahmic

(2018). How do parents acquire information to support their child with a disability and navigate individualised funding schemes? Journal of Research in Special Educational Needs, 18, 25–35. https://doi.org/10.1111/1471-3802.12390

32.

Trainor

A. A.

(2010). Diverse approaches to parent advocacy during special education home—School interactions: Identification and use of cultural and social capital. Remedial and Special Education, 31(1), 34–47. https://doi.org/10.1177/0741932508324401

33.

Winch

(2006). Constructing a morality of caring: Codes and values in Australian carer discourse. Nursing Ethics, 13(1), 5–16. https://doi.org/10.1191/0969733006ne846oa